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PCP MEETING SUMMARY, June 2014

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PCP MEETING SUMMARY, June 2014 MEETING SUMMARY PRESIDENT’S CANCER PANEL CANCER COMMUNICATION IN THE DIGITAL ERA: OPPORTUNITIES AND CHALLENGES June 13, 2014 San Diego, California This workshop was the first in the President’s Cancer Panel’s (the Panel) 2014-2015 series, Cancer Communications in the Digital Era: Opportunities and Challenges. During this workshop, representatives from the academic research community, government agencies, advocacy organizations, and nonprofit organizations convened to discuss ways to organize a series of meetings focused on the potential of new media, especially social and participative media technologies, to improve the control of cancer. Participants were encouraged to live-tweet at #NewComm4Cancer during the workshop. President’s Cancer Panel Barbara Rimer, Dr.P.H., Chair Owen Witte, M.D. National Cancer Institute, National Institutes of Health Abby Sandler, Ph.D., Executive Secretary, President’s Cancer Panel Meeting Co-Chair Bradford W. Hesse, Ph.D., Chief, Health Communication and Informatics Research Branch, Division of Cancer Control and Population Sciences, National Cancer Institute Participants David B. Abrams, Ph.D., Executive Director, The Schroeder Institute for Tobacco Research and Policy Studies, Legacy David K. Ahern, Ph.D., Special Advisor, Health Communications and Informatics Research Branch, Division of Cancer Control and Population Sciences, National Cancer Institute Nelvis Castro, B.S., Acting Director, Office of Communications and Education, National Cancer Institute Wen-ying Sylvia Chou, Ph.D., M.P.H., Program Director, Division of Cancer Control and Population Sciences, National Cancer Institute Robert Croyle, Ph.D., Director, Division of Cancer Control and Population Sciences, National Cancer Institute Robert D. Furberg, Ph.D., M.B.A., Senior Clinical Informaticist, RTI International Peter Garrett, A.B., Senior Advisor to the Director, National Cancer Institute Karen Glanz, Ph.D., M.P.H., George A. Weiss University Professor, University of Pennsylvania David H. Gustafson, Ph.D., Director, Center for Health Enhancement Systems Studies, University of Wisconsin-Madison Beth Karlan, M.D., Director, Women's Cancer Program, Cedars-Sinai Medical Center Sanjay Koyani, M.P.H., Deputy Director, Office of Health Communication and Education, Center for Tobacco Products, U.S. Food and Drug Administration Barry S. Kramer, M.D., Ph.D., Director, Division of Cancer Prevention, National Cancer Institute J. Leonard Lichtenfeld, M.D., Deputy Chief Medical Officer, American Cancer Society San Diego, CA 1 June 13, 2014 Helen I. Meissner, Sc.M., Ph.D., Director, Tobacco Regulatory Science Program, Office of Disease Prevention, National Institutes of Health Kevin Patrick, M.D., M.S., Professor, University of California, San Diego, The Qualcomm Institute Lygeia Ricciardi, Ed.M., Director, Consumer eHealth, Office of the National Coordinator for Health Information Technology, U.S. Department of Health and Human Services Julia H. Rowland, Ph.D., Director, Office of Cancer Survivorship, Division of Cancer Control and Population Sciences, National Cancer Institute Shannon Stokley, M.P.H., Associate Director for Science, Immunization Services Division, Centers for Disease Control and Prevention Eric Topol, M.D., Director, Scripps Translational Science Institute; Chief Academic Officer, Scripps Health; Professor of Genomics, The Scripps Research Institute Kasisomayajula “Vish” Viswanath, Ph.D., Professor of Health Communication, Harvard School of Public Health, Dana-Farber Cancer Institute, Dana-Farber/Harvard Cancer Center WELCOME AND INTRODUCTIONS Dr. Rimer welcomed invited participants and other attendees to the meeting on behalf of the Panel. She introduced Panel members, provided a brief overview of the history and purpose of the Panel, and described the aims of the current series of meetings. Dr. Rimer also introduced the meeting co-chair, Dr. Bradford Hesse, and the workshop facilitator, Robert Mittman. APPROVAL OF WORKING GROUP RECOMMENDATIONS Dr. Witte reported that the President’s Cancer Panel Working Group on the HPV Vaccine met on July 24, 2012; September 13, 2012; November 16, 2012; and January 9, 2013, to discuss policy, research, and program recommendations for the 2012-2013 report to the President. Dr. Witte moved to accept the recommendations made by the Working Group on those dates. Dr. Rimer seconded the motion, and Drs. Rimer and Witte voted to accept the recommendations. OPENING ROUNDTABLE The goal of the current workshop is to provide input to the President’s Cancer Panel on the 2014-2015 workshop series Cancer Communications in the Digital Era, including possible topics, key questions to address, and potential participants. Participants introduced themselves and were asked to describe a cancer-related problem for which emerging digital media may be able to provide a solution. Participants cited the potential for digital media to facilitate communication and coordination across scientific disciplines, as well as across sectors (e.g., government, private sector, academic institutions). Social media could be used to promote healthy behaviors, and also could support patients and their families across the cancer continuum, including prevention, screening, diagnosis, treatment, and survivorship. Digital media may be able to help improve patient compliance and help patients weigh evidence and make decisions. There also are opportunities to more efficiently connect patients to appropriate clinical trials and collect information from patients on their clinical trial experiences. Data collected via digital media could help refine clinical trial processes and behavioral interventions. There are opportunities to learn from what people are saying on social media and to interact with people in settings in which they already are engaged. Digital media could be used to address myths and inaccurate information. One suggestion was to utilize modern communication tools to inform the public, providers, and adolescents about the human papillomavirus (HPV) vaccine. Consideration should be given to how social media should be used to reach people across the lifespan, as well as populations with limited resources. San Diego, CA 2 June 13, 2014 NEW MEDIA: OVERVIEW AND APPLICATIONS ALONG THE CANCER CONTINUUM DR. ERIC TOPOL NEW MEDIA: APPLICATIONS ALONG THE CANCER CONTINUUM Background A practicing cardiologist at Scripps in La Jolla, California, Dr. Topol is well known for leading the Cleveland Clinic to become the leading center for heart care. While there, he also started a new medical school, led many worldwide clinical trials to advance care for patients with heart disease, and spearheaded the discovery of multiple genes that increase susceptibility for heart attacks. Since 2006, he has led the flagship National Institutes of Health (NIH)-supported Scripps Translational Science Institute in La Jolla and is a professor of genomics at The Scripps Research Institute. He is chief academic officer of Scripps Health and a co-founder of the West Wireless Health Institute. Dr. Topol pioneered development of many medications that are used routinely in medical practice, including t-PA, Plavix, Angiomax, and ReoPro, and he was the first physician to raise safety concerns about Vioxx. He has published 1,100 peer-reviewed articles and over 30 medical textbooks. In 2009, along with Drs. Francis Collins and Harold Varmus, Dr. Topol was named one of America’s 12 “Rock Stars of Science” in GQ magazine. In 2011, the University of Michigan, where he had served on the faculty, initiated the Eric Topol Professor of Cardiovascular Medicine to recognize his contributions. The University of Rochester, his alma mater medical school, awarded him the Hutchinson Medal, the University’s highest honor. In 2012, he was voted the most influential physician executive in the United States in a poll conducted by Modern Healthcare. Dr. Topol was elected to the Institute of Medicine of the National Academy of Sciences and is one of the top ten most-cited researchers in medicine. His book, The Creative Destruction of Medicine (Basic Books), was published in 2012. Key Points . Dr. Topol encouraged meeting participants to become active on Twitter in order to gain a better sense of the power of social media. Popular media and cancer center advertising often create false hope about cancer cures despite the fact that cancers often recur, even with excellent therapies. For example, a Time magazine cover included the headline “How to Cure Cancer,” and an MD Anderson Cancer Center publication stated, “Together, We Will End Cancer.” . Messages about curing cancer mislead the public. An advertisement for the Knight Cancer Center announced, “One Down. We’ve already taken down one cancer. Help us take down the rest” in reference to advances in treatment for chronic myeloid leukemia (CML). This message was offensive to CML patients who cannot be cured with current treatments. An article in Annals of Internal Medicine analyzed cancer center advertising to the public and found that cancer centers evoke hope for survival, focus on innovation, and use fighting language, among other things. Social media can be used to spread more accurate messages and help patients have more realistic expectations. A survey by the Huntsman Cancer Institute found that 34 percent of respondents would not seek genetic testing to predict the likelihood of developing a hereditary cancer. This is troubling because genetic testing for cancer can be beneficial. San Diego, CA 3 June 13, 2014 . An article
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